Parenthood. Life. Down syndrome. Faith.

My life changed a lot when I found out my 3rd child would be born with Down syndrome. But then again, it really hasn't changed so much.

We're still living life, trusting God, raising our kids, and loving having a baby in the house.

Wednesday, September 18, 2013

Reality Check

Yesterday I posted about how great Cade is doing, how "typical" he is in so many ways.  I want to show a bit of the flip side today.  Cade IS doing great, but he does have Down syndrome.  So, to blow away any rainbows and unicorns left by yesterday's post...

Cade doesn't play with toys yet.  At 5 1/2 months, a typical baby would eagerly grab toys to play.  He looks at them, but doesn't even try to hold them.  If I put a toy in his hand, it falls to his side almost immediately.  He will bat at toys hanging above him, but won't reach out and take it or interact with it. 

He rolled from his stomach to his back a few times several weeks ago, but never since.  This isn't entirely unusual for any baby, but by 6 months most are rolling from side to side pretty easily. 

He's learning to sit, but needs a lot of support.  He still folds in half readily.

Cade doesn't seem to recognize his name, or anyone else's.  He won't look at mommy when we ask "Where's mommy?"

If you were to look at a milestone chart (which I don't do, except for today), Cade is very much like a typical 3-month-old. 

For a child with Down syndrome, this is all very normal.  Cade is doing great and he's right on track.  He smiles and flirts, he laughs, he loves peekaboo.  But yes, he is delayed a little.  He undergoes occupational therapy once a month, soon to be twice a month.  We work on skills needed for rolling, sitting, etc. 

Also, medically, while Cade is a total superstar, sometimes things still pop up.  Leukemia, seizures, and thyroid issues are very common and often show up anytime in the first two years.  So every time Cade wiggles funny, we take note.  Any red spot whose cause I don't know, I keep an eye on.  And when we take him to the doctor, our pediatrician takes our concerns seriously.

For instance, Cade has had tremors in his right arm and head since Wed, July 24.  Every day, usually several times a day.  So we had an EEG to rule out seizures.

Sleep-deprived EEG
The EEG was normal, so for now we're on a "wait and see" status.  At any point, we may have a neurology consult take a look. 

My reading pile is full of titles like Gross Motor Skills for Children with Down Syndrome, Babies with Down Syndrome, and How Smart is your Baby (a book about brain development in kids with Down syndrome).  Most of my new Facebook friends are moms of kids with Down syndrome.  It's a pretty great community and I'm honored to be a part of it. 

Mostly, I'm honored to be Cade's mom.  He's pretty amazing!

Tuesday, September 17, 2013

Shhh...Don't Tell!

Let me tell you about Down syndrome.  It comes with a laundry list of medical complications.  A baby can have any number of these issues and often will have multiple issues.
  • hearing loss - up to 80%
  • vision impairment - 50%
  • low muscle tone - 80%
  • heart defects - 65%
  • umbilical hernia - 50%
  • issues with digestion - 50%
  • trouble breastfeeding - 85%
  • trouble eating solid foods - a lot
 As a parent with Down syndrome, you'll likely hear the worst case scenarios...

He probably won't breastfeed.

He might need hearing aids. 
                     Most likely he'll wear glasses.

Learning to roll or sit up is difficult because of low muscle tone.

He'll be constipated.  

He'll have heart defects and need to go to the NICU after birth.  


Now let me tell you about Cade.

He doesn't have any of that. 

He never got the memo.  He breastfeeds, he eats solid foods, he rolls, he's learning to sit.  His muscle tone is almost as good as our other kids'.  He did have minor heart defects at birth, but miraculously they've all resolved.  He poops--usually.  His hearing and vision are great. 

Please don't tell him that he has Down syndrome!*

The slogan for this year's Buddy Walk (a national walk that raises money for Down syndrome research) is "Expect me to succeed.  I will."  We expect nothing less of our other children and we expect the same for Cade.  

He can.  
               He will.  
                            He is.


Not a fan of strawberries.

*For those who would take this literally, of course we would never keep this a secret.  Down syndrome is, and will always be, part of who he is.  

Saturday, September 14, 2013

The Things That Matter

A lovely friend of mine posted this on her Facebook page today.  It's her photo, of her kitchen, of her table.  It's real and beautiful and I wanted to share it.  Without further ado, and with her permission...

As I was wiping down the dinner table this evening I got to thinking.... Sure it's "just a folding table and mismatched chairs", but it's something more. It's where we eat our meals-together, all of them. It's a family school room desk. It's a conference table. An arts and crafts center. A cooking show stage. A mountain to run around or hide under. It doesn't have to be fancy. It doesn't have to match. It's where we come together. 

Sunday, September 8, 2013

Life is Funny

I've often heard that humor is the best medicine.  And so often, it's true! 

Just hangin' around...

Licking my friend's shoulder...full on tongue, yum!

Life is funny.  Laugh it up.

Tuesday, September 3, 2013

That sinking feeling

You know that feeling you get in the pit of your stomach when you are faced with an uncomfortable truth?  Often described as "that sinking feeling".  Dread.  Realization.

This happened to Shannon and me this week in separate incidents.

Shannon was at a park and saw another dad with a 5-6 month old baby.  The dad was bouncing the baby and ducking as the baby tried to grab his nose, his hair, his ears.  The baby was everywhere!

For me, it happened a day later at a restaurant.  Cade got fussy so I put him on my lap at the table.  He was very content to just sit.  And it hit 5 months, our other two kids had the "10 foot reach".  You know what I mean: you have to clear the table of every item because the baby has an impossibly long reach.  All glasses and silverware must be safely out of the way.  Waitresses always put things within baby's reach, leading mom and dad to dive for said item and pull it out of the way before baby can grab it.

Cade doesn't do that.

Ohhhhhhh, there's that feeling.  The lump in my throat.  The gnawing feeling in the pit of my stomach. 

Don't get me wrong, Cade is often very active and loves to wiggle.  But he doesn't grab for things on the table.  Or for our noses.  He's more like...a 3 month old.  Oh, there's that feeling again.  Now I'm half sick with it.

I suspect every parent of a child with special needs has this moment.  This realization that "My child isn't normal."  In the world of special needs, we'd say "typical" instead of normal, but that first moment of sick realization is not politically correct.

I've known since last November that Cade would have Down syndrome.  I've read scads of books, I've researched the latest therapies, of course I know that Cade isn't typical.  But my heart doesn't always get the memo, leading to this week's painful realization. 

Why am I posting this?  Because it's on my mind, but also because I want readers to know that my blog isn't "rainbows and unicorns".  So far, life with Cade has been very easy, very much like our other children.  I don't have big surgeries to write about, or vast disabilities.  We don't really even have any "issues."  But life isn't rainbows and unicorns.  It never is, not with any child.  We worry constantly about our kids, disability or no.  I worry more about Cade, though, and I watch him every day...Can he see?  Will he be able to eat solid foods?  When will he sit up?  I try not to compare milestone charts, but comparing him to our other kids is just inevitable.  I can't help it. 

So yeah, the sinking feeling.  But look on the bright water glass is still safe at any restaurant.  We don't have to ask for a table for 8 just to accommodate my octopus baby.  And for a little while longer, I can enjoy "three month old" snuggles, even if my baby is five months old.  I've always said my babies grow too fast...

Cade - almost 5 months